Marie Curie Research Voices Group
We set up the Research Voices Group in 2013 to make sure we're engaging meaningfully with people who have personal experience of living with terminal illness, of caring for someone with a terminal illness, or of bereavement.
Our aim is to enable members of this group to contribute at all stages of our research and policy work. Our members come from all four nations of the UK.
Why involve the public in research?
We want to make sure the views of people affected by terminal illness are represented in all areas of the research we fund, to help us ensure that its findings are used to improve end of life care for all.
Our research is shaped by an active partnership between researchers and the public – it's carried out 'with' or 'by' members rather than 'about' or 'for' them.
We recognise that people affected by death, dying or bereavement offer valuable knowledge and expertise based on their lived experience. By including their views in our research and policy work, we ensure that our research and its outcomes are more relevant and useful to the people we most want to help.
The UK Standards for Public Involvement offer a guideline to good public involvement and set out what you can expect from Marie Curie when you're involved with research.
The best research on end of life care always keeps the lived experience of people affected by dying, death and bereavement at its very heart – at Marie Curie we are so privileged that the Research Voices Group is there to help us do just that.
How do we involve people in research?
Members of our group have given their support in a wide range of activities, including:
- providing their opinion on research proposals that we're planning to fund
- helping to identify key questions for palliative and end of life care research
- advising on research projects
- talking about research at external events and conferences
- sharing their experience at policy-making forums, speaking at conferences or attending Government events
- reviewing posters submitted for the Annual Marie Curie Palliative Care Research Conference.
Who can get involved?
Anyone with personal experience of an illness they're likely to die from, of caring for someone with a terminal illness or of bereavement is welcome to join.
We particularly welcome people from diverse backgrounds and who have lived experience in the past few years.You must be aged 18 or over.
You don't need any experience or knowledge of research. We'll provide training and guidance so you can make the most of your time as a member of the group.
The amount of time that you can give is up to you — you can do as little or as much as you'dlike and you can choose which activities you get involved with. The group meets either online or in-person for two hours every two months.
It is undoubtedly therapeutic after my wife's traumatic illness and death. I can do as much or as little as I want - and I can say 'no'. Everything I do is in Wendy's memory.
What we offer
As a Research Voices Group member, you'll get:
- the chance to help us improve end of life care both within and beyond Marie Curie services
- an opportunity to enhance your skills and gain new experiences
- training and support
- out-of-pocket expenses
- support from our Research Team and other members of the group.
There are so many reasons I'm proud to support Marie Curie. The organisation helps so many people and it listens and uses feedback, so our input always feels valued.
Get involved with the Research Voices Group to help make a difference to end of life care for all.
To find out more, or to express an interest in joining the Research Voices Group, email research.info@mariecurie.org.uk. You can also see our flyer for more details.
